As Chanel Jones lay in a Stony Brook Hospital bed, pneumonia spreading through both her lungs, her only thought was whether her newborn daughter was lonely. It was June 2008. Just two days earlier, Jones had been in the maternity wing of that same hospital preparing for an emergency c-section. Despite her requests to move around during the 24 hours she had to wait before the surgery, doctors ordered her to lay on her back in the lumpy hospital bed. This is what caused water to gather in her lungs and triggered the infection that left Jones fighting for her life.
“Finally, I said, let me out of this hospital or I am going to die,” Jones said. “Just being in the hospital was causing my stress and anxiety to go up.”
This was not the way Jones anticipated her labor would go, but it all fits the statistics: Jones is black and was four times more likely to die during childbirth than the white women in that same hospital, according to the New York State Department of Health.
“What we see in Long Island is one of the highest rates of racial residential segregation in the United States so the truth is that does play a role in the outcomes of the most vulnerable members of society: infants and pregnant women,” Dr. Martin Hackett, an assistant professor of public health at Hofstra University, said.
In Nassau County, the infant mortality rate per 1,000 live births is 8.7 for black babies compared to 2.5 for white babies, according to the New York State Department of Health. In Suffolk County, it is 6.5 for black infants versus 2.9 for white infants.
Jones made it out of that hospital the next day. Now, 10 years later, she has become part of the wave of birth advocates on Long Island that have turned their attention to this issue.
“I just decided from then on, if I could do something to help someone avoid what I went through then I would, so now I’m a doula,” Jones said. “Being a doula...empowers me to kind of do something to help someone avoid going through the kind of experiences I’ve had myself.”
Jones is one of ten doulas working with the Black Maternity Wellness Collective, a program formed last year by the Long Island Doula Association. The collective aims to increase the number of black doulas on the island so that they can support other black women during their pregnancies.
“A doula is a woman who mothers the mother,” Kathy Koncelick, who founded the collective, said. “We are passing on education, information, and birth wisdom.”
Doulas are not medically trained, though they can be. The main role of a doula is to assist the mother and her family throughout the pregnancy and labor process, according to the Long Island Doula Association website. They go through extensive training to become a certified doula and use their knowledge to help each mother develop a unique birthing plan.
“I think doulas can help a lot with [the maternal mortality crisis] because they become another set of eyes,” Catherine Marrone, a Stony Brook University sociology professor, said. “I think that will lead to more of a sense of control over the experience, but also they’re someone to ask the questions that someone who is experiencing the pain might not ask.”
Jones is not the only black doula in the collective who has a traumatic birth story of her own. Karma Tudor, who lives in Babylon, nearly lost her life when giving birth to her son in 2007.
“I was having difficulty pushing because I didn’t know what that was,” Tudor said. "I didn’t have any childbirth education or someone to tell me what that was supposed to be.”
Tudor had such a hard time pushing her baby out that doctors ordered a vacuum assisted birth and her son was pulled out of her using forceps.
“I remember the pain. If I had a knife or scalpel next to me I would have cut myself open. And I remember hearing the blood hit the floor.”
She needed two blood transfusions to stay alive. And just like Chanel Jones, even as she fought for her life, Tudor’s only thought was if her newborn baby was lonely.
Eleven years after that horrifying birth experience, Tudor read a national maternal mortality article in the New York Times. That same year she quit her corporate job and became a doula.
“Being a black mom, you will feel more comfortable with a [black doula],” Tudor said. “You know what it’s like to be a black woman, especially on Long Island. Not to take away from any other doula, but there is just that special relationship that builds between a black mama and doula.”
The Black Maternity Wellness Collective was formed after Kathy Koncelik learned about the racial disparity between white and black mothers and babies from fellow doulas who attended the first annual Birth Equity Breakfast. Last March, Long Island birth advocates came together at Hofstra University over bagels and coffee to formally address the infant and maternal mortality crisis in Nassau County. During the breakfast, Dr. Martine Hackett and Dr. Nellie Taylor-Walthrust kicked off their project, the Birth Justice Warriors.
“A birth justice warrior is someone who is passionate about spreading the word about birth equity,” Hackett said. “Birth equity is the understanding that every baby deserves to be born and to live a healthy life.”
The project aims to make injustice visible and fight for healthy mothers and babies in Nassau County through advocacy, clinical care, and community education. In the year since the project was launched, they have trained 27 healthcare professionals and community members to be Birth Justice Warriors. They have also been awarded a $2,800 grant through the North Shore Child and Family Guidance Center in Roslyn Heights that has helped the program grow and thrive this past year.
“It is really satisfying that people are recognizing this issue that needs to be addressed,” Hackett said. “One problem we have not had is passionate people who really are interested in addressing this topic.”
Samantha Hom is one of those people.
“It was a no brainer being involved,” Hom, a Syosset-based doula said. “I was really in the community of racial justice and I was really in the community of reproductive justice and those two worlds came together.”
Not only is Hom a Birth Justice Warrior, but in her work as a doula, she says she is committed to creating a “society in which all families have access to quality health care.” She also has a goal: to become financially stable enough so she can take on lower income mothers for free.
“I feel that this is a really good time to be talking about this issue,” Hackett said. "You have organizations that didn’t exist 4 or 5 years ago who are doing great work. And I think that is a big piece of this. This is part of a larger social justice movement.”
The past year has been a successful one for both the Birth Justice Warriors and the Black Maternity Wellness Collective, but this is just the beginning. Both organizations increased their members and recieved grants that will help them continue to grow this coming year.
“How I know we are successful is I am talking to the doulas who are currently supporting a black mother and they are educating them to take back the power,” Koncelick said. “When a birth does not go the way a mother wants it to go, as doulas we take that hard. When birth goes the way the mom wants, we’re elated. That is how I know this is working. These black doulas are elated.”
This April, the Long Island Doula Association received a $10,000 grant from the American Association of University Women specifically for the Black Maternity Wellness Collective. The collective plans to use the funds to train black women from low-income areas to become doulas, and, in turn, pay doulas who provide free servces to black pregnant women of low income.
“One half of this program is to take women in these communities where the mortality and morbidity is so high and say to them ‘there is a place for you here. Become a doula, support your neighbors’,” Koncelick said. “For women who can’t afford the training we have scholarships, and to have scholarships we have to have the funding.”
In 2019, the Birth Justice Warriors will officially begin guided discussions with Nassau County community members around the issues of maternal and infant mortality, called Conversation Cafes.
Hackett says the goal of these conversations is to incorporate community feelings surrounding pregnancy and childbirth with evidence-based information. By doing this, she hopes to help people shift from small talk to important conversations that directly address the infant and maternal mortality crisis.
“Not only are there advocates for birth justice looking for a way to get together, but women within the community are open to understanding this issue,” Hackett said.
The project will also begin to work on the clinical aspect of their initiative by establishing the first “birth justice friendly” clinical site. They will partner with Planned Parenthood of Nassau County to evaluate how well they are educating their pregnant patients about breastfeeding, their rights during labor, and other clinical practices to ensure culturally appropriate and respectful care for black mothers.
“For me in terms of trying to bring Birth Justice Warrior together is really bringing warriors that have already been on the field and sort of helping us find our focus and find our mission,” Hackett said.
The second annual Birth Equity Breakfast took place almost exactly one year after the movement took shape on Long Island. Doctors, doulas, and other birth advocates once again gathered at Hofstra University to discuss the triumphs from the past year and how they will tackle the next one. Samantha Hom exchanged contact information with a doula from Westchester while Kathy Koncelick handed out flyers for the Black Maternity Wellness Collective. There was a flow of business cards between all the women in the small Hofstra gathering space, an indication that the fight will continue.